disability studies

Wow. I bet you thought I’d disappeared. I did, into the abyss of a semester back after a sabbatical. But… I’m baaaaaaack!

As promised, this is part two of my discussion on service dogs, and this post is all about the training process. As I mentioned in Une vie de chien – Partie I, Max and I trained together for a year before he graduated from “service dog in training” to “service dog.” That’s it. That’s all it took. Boom. Done. Mic drop.

Kidding. Kidding. It was one of the most intense experiences in my life, and that includes grad school and the dissertation years.

I can’t say enough about Jim. Right from the beginning, he let me know what to expect from the process and let me know, more than once, how difficult the task that lay ahead. This was a commitment. To Max. To myself. To training. To Jim.

This commitment meant beginning with three sessions per week, lasting usually about 2-3 hours, on top of my already full work schedule and long commute. Three days per week, I traveled from Indy to Muncie to Richmond. Often, I did not get home until 9pm or 10pm, and then I had to turn around and go right back to it the next day. In between training sessions, I did training at home, at the office, in stores, in restaurants. At home, we had regular formal sessions. Out and about, every moment was an opportunity. Beyond my chic purse, I got to add the additional bling of a clicker and a handy treat bag, filled with desiccated hotdogs (no nitrites, of course) and other such yumminess.

At the beginning, when Jim met with me and Jeevan, he had said (not verbatim, creative license here): “You know, this is going to be tough. You’ll always be training. You’re going to carry treats, and you’re going to train whenever you see a moment. Things are going to take longer, and it can get frustrating. It will be frustrating at times for Jeevan when he sees your relationship with Max grow and when it’s difficult for you to pay attention at a restaurant because your mind is always partially on Max. You have to be ready. Go home. Think about this. If it’s right for you, and I’m right for you and Max, call me, and we’ll start.”

It was daunting to be sure, but we were ready. Jim evaluated Max, and though he was a wild child then, he had potential. He asked what I thought a service dog could do for me. At that time, I was struggling with a failing shoulder and needed help carrying things, and I could really use something under my legs when sitting in chairs. Jim’s response? “A dog as an ottoman? Hmmmm.” Turns out, Jim was right: I never did train Max as an ottoman. Though, from time to time, he likes to get under my feet and rest his head on my shoe, but that’s not one of his service tasks; it’s just because he loves his mama.

We began with the basics that all dogs should have. Max was a blank slate and could only “sit,” so we had to begin with: down, stay, wait, leave it, loose leash walking, etc. Those are fairly easy, but service dogs have to have these skills down pat before they can even move on to service skills.

We did clicker training, which is a form of positive reinforcement training. You first teach the dog that a click means a reward (treat, love, kisses, “good boy”). Then, you mark a desired behavior with a click and reward. Eventually, you mark the behavior with a command. The real trick is to click at the right time and with the correct behavior.

For example, when we were training Max to “stop” on command (mid-walk, mid-trot, whenever). As SOON as Max stopped for any reason, “CLICK!” TREAT! At the beginning, the stopping is pretty much when you stop, but you CLICK! and TREAT! The wheels start turning in the dog’s head:

This is marking desired behavior. We used this to train Max such commands as: stop, wait, fast, slow, leave it, etc.

The extra interesting part of training was the complex behaviors, and this requires shaping behavior using successive approximation (that’s what it’s called, right Jim?). Jim is extra awesome at figuring out this part. You begin by naming the desired task and then figure out the steps to get there.

For this, Jim knew that Max needed to first offer a paw. For this, we waited until Max placed a paw near us.

JIM: “CLICK!” TREAT!

MAX: “Wha? What did I just do? Hmmm. I’m going to randomly do tricks and see what happens. Sit. Down. Kisses. No? Hmmm. This guy is dumb. I’m going to poke him.”

JIM: “CLICK!” TREAT!

MAX: “What? Weirdo. Not sure what I did again. Sit. Down. Kiss. Sit.

JIM: ….

MAX: “NOTHING? Man! Poke.”

JIM: “CLICK!” TREAT!

MAX: “Dude! It’s the paw! Paw!!!!! Poke.”

JIM: “CLICK!” TREAT!

MAX: “Awesome! Poke.”

JIM: “CLICK!” TREAT!

MAX: “That’s it! Poke. Poke. Poke.”

JIM: “CLICK!” TREAT! Good touch!

You get the idea. Once you mark the behavior with a command (“touch” in this case), you begin clicking and treating ONLY when the behavior is offered AFTER a command. The idea has to be yours, not the dog’s. To make sure this is the case, you can test it with multiple commands. For example, if you say “sit,” the dog should sit, not offer a paw. Try a couple of different commands, then say the new one. Once you consistently get the correct behavior, your dog has got the idea. Even so, go home and PRACTICE!! I had to keep a log of our home practice sessions: I had to log: 1) each skill we practiced; 2) How long we spent on each one 2) How many times the correct behavior was offered; 4) any distractions; 5) notes.

Wait. How is this related to pushing a button? A hand is not a button, and “touch” is not “push.” This is the cool part.

Once Max had the idea of touch down, we added a target. We’d say “TOUCH” and, with a yellow square in our hand, we’d click any time he’d offer a paw near the marker. The idea is that you reward the behavior, being lenient at first, and getting stricter as you move on. Eventually the dog only gets a CLICK! when it puts the paw on the marker. Then, you move the marker. On the floor. On the wall. On your thigh. The dog eventually associates touch with a target.

Wait. That’s still not pushing! Ok, ok. I’m getting there!

In the end, we want Max to apply the correct amount of pressure on the target. This is “PUSH!” Jim had me buy an “easy” button for practice. You know, one of these:

We put the target on the button and began clicking and treating when the button was pushed hard enough to get the trademark, “that was easy!” Then, we marked that behavior with the command “PUSH!” We eventually moved on to doors, door openers, grocery carts. Now, Max can PUSH! this:

And this:

And even this:

It’s true, some doors are too heavy for him, and it’s too heavy for me, but he gives me that extra power. We do it together!

For a more visual idea of how this happens, look at this cool little example:

You can see that it is quite the process. Now imagine this for every complicated skill Max and I had to learn together. Now you know why I spent the better part of a year exhausted!

Here is a list of the skills Max has (totally forgetting some). Don’t confuse the skill with the command. For the most important commands, I chose words that aren’t always obvious to others because I can’t have other people trying to tell my dog what to do. Sometimes people feel that they can tell me he doesn’t mind very well because he doesn’t listen to them. The mark of a good dog on duty is that he doesn’t mind anyone but the handler!

Sit

Down

Stay

Wait

Stop

Leave it

Heel

Watch me

Greeting behavior

Refocus behavior

Go to X (bed, rug, towel, mat, etc).

Get it (keys, pencil, paper, credit card, bottle)

Give it to X (a person, me or anyone else)

Drop it (on floor, in garbage, etc.)

Hold (keep whatever he has in mouth until I say so)

Slow

Fast

Push (cart, button, door, etc.)

Pull (door, wheelchair, cart, coat sleeve, socks)

Touch

Left

Right

Forward

Backward

Crawl (good for getting into small spaces)

Under (table, chair, etc.)

Up (onto something)

Off (off of something)

Brace (stiffen his front legs to act as a sort of cane)

Help mama (i.e. go into service mode when he’s not actively on duty – mostly at home)

Bark on command

Spin right (helps to get into tight spaces)

Spin left (helps to get into tight spaces)

Sideways right

Sideways left

Follow (usually when I am in my wheelchair and am being backed up; he follows in front).

Pee on command

Poop on command

Go find

Step up (bracing for going up step)

Step down (bracing for going down step)

Dance with mommy (just for fun)

Command to get harness on

Command for service position

Command to finish service

Command for bedtime

Let’s go

Thank you!

Up up: Get in car and wait for harness to be attached to security belt before getting all the way in

Stand

Not an exhaustive list, but you get the idea. Here’s another list for your perusal.

But… there’s more to training than that. There’s public access training. This means that, once your dog has a good skill set, it needs to be able to perform these skills EVERYWHERE and with distractions, like: kids, walkers, wheelchairs, food on the ground, other dogs, squirrels!, people he loves, loud noises, people talking to you… etc.

This is the most important, and perhaps most frustrating part of training, and I will get to that in Partie III! Also, there will be more about the wonderful Jim because he helped me not lose my mind during this crazy part of the training. I promise not to wait so long until the next post.

I’m putting off Partie Deux of my post about life with a service dog because something else has come up that has spurred me to write: disability and academia. This has, in fact, been on my list of blog topics for a while, but an interesting email exchange between some colleagues prompted the timing.

One of my colleagues (Colleague 1) forwarded via email to the department this article, which discusses gender bias in student evaluations. It’s a very short article about a study with a very small sample size, but my colleague sent the email in an attempt to spur conversation, as we are in the midst of self-evals (yay…). Another colleague (Colleague 2) responded that this article had a major fault (actually, the word “revolting” was used): it failed to raise the question of race. As I read the reply, I thought, “interesting, – strong language – but not the point of the study. That’s a different bias, and a different study.” So, Colleague 1 replies to Colleague 2 that, unfortunately, circumstances land us in the same boat. Colleague 1 went on to point out that most job ads state that “women and minorities are encouraged to apply” in order to support the unfortunate similarities of the situations.

So far, I had been silently following the email with interest, but this got me going. I’ve taken exception to the application process at many institutions, a process that often neglects the very idea that someone with a disability might apply, or would be encouraged to do so. Some places tack on something to include LGB diversity (I’m purposefully leaving out the TQ because they are usually left out – yay Obama for mentioning the T in his SOTU: see the Time article on it) , but in my job search, I did not encounter anything about disability. Yes, I know, the “minority” thing is a blanket term. Fine. I accept that. However, when you go online to actually apply, they ask optional questions about race/ethnicity and gender. I have never (to date) been asked about disability. I know that was eight years ago, but I’ve chaired my fair share of search committees since then, and it’s still not on our app. I realize that many people would not choose to disclose disability, as many people choose not to answer the race/ethnicity and gender questions, but if we are going to gather data, we should gather all the data.

Having served on a “diversity and inclusion” task force, I know that the answers to these types of optional questions are used to report data on recruiting and retention of minorities. My own institution uses data from surveys for retention efforts of both students and faculty who are part of a minority. Though, as far as I can tell, it stops with race and ethnicity. We’ve finally got some LGBTQ-ish stuff happening, I’ll admit. But, – and here’s the thing that got me to respond to this email exchange – no one has ever tried to recruit me (except, ironically, the Marines as a musician in high school, and they only saw my info on paper) or retain me. And, according to this data, only 7% of doctoral students have a disability.* Not all of them will go into academia, or succeed in academia. Recruitment and retention are important! Not once has my institution approached me to ask how they might make my life easier, make me want to stay. I’m a smart cookie. I’m a good great teacher. I work hard on committees. I’m collegiate. I do research. And I make them look more diverse, if they’d ever stop to think about disability as diversity. But, they don’t. I’m not only a disabled faculty member, but I woman, and also partly an administrator whose made a name for herself on campus. I’ve even offered to help start a mentorship program for disabled students, explaining how difficult it can be to shift from having parent-advocates to being your own advocate at a time when you want to be making new friends, not waves. I’ve been here eight years and nada.

For the record, here was my reply to the email exchange:

And, I might add, nowhere does it address disability! People, students and employers included, often assume that you are less able in all ways because you are disabled in some way(s).

As [Colleague 1] implies, I think it would be safe to say that all minorities are judged according to a standard that was not made by, or for them. The inequities are of different sorts, but inequities just the same. In my book, all minorities (women, people of color, LGBTQ, disabled, etc.) thus have a duty to work towards diversity and inclusion for all groups, not just their own. I even have a blog entry about it! https://lilliputiae.com/2014/12/11/from-the-outside-in/

A couple of things bothered me about this exchange. One, colleague 2’s defensiveness about a different issue, which made an assumption that we do not care about race/ethnicity. This made me feel as though gender bias did thus not matter to this colleague, who expected us to care about race. I appreciated that colleague 1 attempted to calm the waters by bringing up the job ad issue, and I know the intent was genial. But, “dammit,” I thought, “if we’re going to talk about diversity, let’s talk about diversity. Let’s stop this, ‘my situation is worse than yours’ game. It gets you nowhere.” As you can tell, my blog includes issues like #BlackLivesMatter and LGBTQ equality. We are ALL in the margins of society. This is why I replied how I did. For the record, as of today, no one has replied to my email. Hmmm.

This brings me to the topic about which I’ve been thinking for a while: “crip time.” This lovely piece by Anne McDonald explains what “crip time” means to her and her disability (CP): Crip Time. For me, crip time means needing extra time to get to meetings, to get up from a chair, to get into my car, to “run” to the student union for coffee. For me, walking is slow because my legs are short, and because I’m in pain. As I said in my last blog, having a service dog also means that I take more time to get places because I have to get him ready, too. Colleagues most often don’t think about where they schedule a meeting, or how hard it will be for me to get there. They don’t think about accessibility or if I have a class to get to afterwards, or how hard it is for me to sit in a chair from which my feet dangle for several hours, pulling on my back and arthritic joints. My life just runs at a different pace.

Unlike someone with motor impairment, I don’t struggle to write or talk. I make myself understood very well. However, my disability takes up a large amount of time in my day, and in my psychical space. It takes time and energy to be disabled, to deal with chronic pain. The idea of teaching on a bad day stresses me out. How can I make it through a two-and-a-half-hour class when my back hurts so bad I want to cry? How do I summon the energy to be passionate about a topic, which usually does make me passionate, when I just really want to load myself with NSAIDs and head to bed? Does this impact my student evals? I have no idea.

Beyond the daily impact, there is potential to impact your career in academia when you have (and disclose) a disability. All of these moments when I wonder if I can go on are also moments when I push myself to continue so I can keep up with my colleagues. So I can get tenure. (Got it now). Recently, Insidehighered.com published an article outlining some research that has been done on faculty work hours: So Much to Do, So Little Time. The article states that, “On average, faculty participants reported working 61 hours per week.” There are also some snazzy charts that break down our pathetic attempts to get work done:

Besides making me want to cry with anxiety about my todo list, this made me think about other types of “crip time.” There are all these random things that get done during the day, and at home, and the coffee shop, and on vacation. Oh, and my 75-mile commute each way, which is made more difficult by my disability. When you add things like pain, slowness (in both mind and body), and physical therapy to this list, it’s downright overwhelming.

The article goes on to say “[…] that the study did not take into account summer work habits — when faculty members may have more time to do research.” This made me laugh to myself a bit, and then die a little inside. In the interest of full disclosure, I got tenure two years ago, but not without much crying and stress about how I spent my summers. The first summer as a faculty member, I had a knee replacement. Not such a big deal, unless you have an underlying disability that makes it even more complicated, and painful. People said, “you’ll have lots of time to read!” Except for the fact that I was so uncomfortable for six weeks that I couldn’t read an article to save my life. The next few summers I read a lot and got some stuff read and written, but I was also revamping our curriculum and designing an inordinate number of new courses. Then I was department chair pre-tenure (aaaack!) – something you feel you can’t refuse when you haven’t been publishing so much because you have had surgery, and because you don’t want anyone to think you can’t handle it. Then my shoulders. Then my back. It never stops. I honestly don’t know how much time I’ve lost to my disability. Time that could have been spent being a better teacher, a quicker grader, a better researcher.

I just finished my “sabbatical,” which mostly turned out to be medical leave without officially being one. I had my second shoulder replacement over the summer. I was feeling great by September and ready to research my heart out when my back rebelled and put my academic goals on hold, and put my life at a standstill. How do I explain that I wasn’t that productive over my leave? Does it make it look like disabled people really can’t hack it? Could I have “stopped the tenure clock” for my disability like people can for having, or adopting, children? Some universities allow clock stoppage for chronic illness (for oneself or a loved one), but is disability a chronic illness?

I’m writing this only hours before I go in for a procedure to help alleviate some of my back pain. A lot of people have back pain, it’s true. Mine is directly linked to my disability. I don’t walk right because of the way my anatomy works, and because of my knee replacement (which has left me with a partially fused knee), and because of my ankle arthritis, which hasfused my ankle on its own, and… and… This also means that my back pain is different than your average back pain. I’m not an athlete who has beat up my body. I’m not old. I’m 38 and live with a disability that includes aggressive, early onset degenerative arthritis. It sucks, but I can’t put it in my self-eval as a reason why I didn’t do all the things I want to do.

I have a feeling that people may raise the question of childrearing and how much time it takes. Agreed. However children grow up and be more independent, and if you’re careful or meticulous, you can plan your timing around your career. Disability never grows up; mine will get worse. I will say this: I got tenure because I put my body in jeopardy to work the 60+ hours faculty seem to work. Now, I have tenure, and I can barely move. Since then, I’ve decided that I could work 60 hours and put in my crip time on top of that, and destroy my body. Or, I could do what I can do within that 60 hours, including crip time, and live with the consequences for my career. What would you do? Career or health? For a long while, I thought it was like Sophie’s Choice, but not so much now. I choose health.

I feel like there is more that I could, or should, say, but I’ll stop here. By last blog was practically a novel, so if you want to know anything else, post a comment or question!

As food for thought, I leave you with this article. It’s about chronic illness, but applicable, and insightful, nonetheless: “Chronic Illness and the Academic Career.” Worth a read for anyone in academia: faculty, staff, administrators.

I’m ending my holiday hiatus with a post about life with a service dog. Well, several posts probably, because there is way more to life with a service dog than you think. Sure, it’s great to have your best bud with you everywhere you go, but it’s about more than that. Way more than that. It’s about partnership, responsibility, a deep bond, and an ever deeper gratitude.

Today’s post is going to concentrate on the paradox of my life with Max; or, the way in which having a service dog mediates my disability, while also making it more visible. A dwarf more visible, you say? Yes, ’tis possible. I’ll get there, but let me digress, as I am wont to do.

Just before the holidays, I did two things that got me settled on this being my next post: 1) traveled to New Orleans on vacation; 2) read Susannah Charleson’s book, The Possibility Dogs. Charleson’s book offers profiles of several psychiatric service dogs and their handlers, interspersed with her own story of training a “demo” dog, the ever clownish Jake Piper. It got me to reminiscing about my own experiences training Max, who is also an eternal clown.

Jake Piper, the demo service dog. www.possibilitydogs.org

Like Jake Piper, Max is a rescue, whom I trained one-on-one with a certified canine trainer and behaviorist. It was one of the most intense endeavors I have undertaken, yet also one of the most rewarding. I don’t think I would have truly appreciated the effort that goes into training a service dog without doing it myself first. Another post will go into my training days with Max, but I think it’s worth mentioning here that service dogs are amazing animals whose training goes beyond skills and into behavior and compassion. Before I get where I’m going (yes, I’ll get there), I want to urge you all to respect these dogs and their work and to respect them and their handler when they are working. Do not talk to them, pet them, or even look them in the eyes. These are open invitations for a dog to break their concentration, which could be harmful to the handler if their safety depends on the dog. Part of the dog’s job is to focus on his partner; the partner’s job is to look out for the dog. Sometimes, that means being harsh with well-intentioned people who try to interact with your dog.

Although The Possibility Dogs is about psychiatric service dogs (Max is a mobility service dog), it offers some valuable insight into daily life with a dog:

Another handler notes: “And here’s the kicker: It’s a kind of trade. For all the good help a service dog gives, that same dog makes you visible. If for you a ‘normal’ life is about being able to be anonymous, good luck. You and your dog and your disability had better be prepared for stares and questions . . . and sometimes accusations. It’s not all bad. A lot of the attention on the dog is supportive. But there’s almost always a spotlight. It slows you down.”

It’s the notion of being in the spotlight that I want to talk about. In my post “Welcome to Lilliput,” I wrote about how having dwarfism necessarily puts me under the spotlight, but having a service dog has not changed that so much as it has shifted the focus. Obviously, my disability is not an invisible one; on the contrary, it is one of the most outwardly visible ones you can have, as my body is so far from the norm. However, it is very easy for people to assume that the disability stops there: with height. I’m short, so I can’t reach things, and I can’t walk as fast on those short legs. Full stop. Think again. For some dwarfs, this is the end of the affair, but for a great number of us, there is a lot of complicated anatomy inside that odd, squat body. (You can read more about dwarfism and disability in one of my Dwarfism Awareness posts). (You can learn more about The Possibility Dogs project on their website).

I like to say that being a dwarf, or at least my particular experience of it, is to live in a liminal space, to inhabit the realm of both the visible and invisible disability. For, I am so visibly different, yet to many, so invisibly “disabled” by my body. I spent a good deal of time in college and grad school attempting to repress the disabled part of my persona. I walked with crutches for 10 years, but leaving for college offered me the opportunity to shed those walking aids in a place where few people knew me from my life before. Where my crutches helped me with speed and distance, I used a bike on campus to get from here to there. In grad school, I used the T or a car. This worked well for me until the long gap since my last major surgery started to close in on me in my late 20s, when my hips, which had long been severely arthritic, began to protest in earnest. This was the beginning of a new phase of my life, and what I now see as the moment when I needed to start “owning” my disability. I’ve had 5 artificial joint replacements in 9 years. I’ve learned that the gap from my last osteotomy to my first replacement was the exception, not the norm.

Accepting the toll that my lax tissues take on my body has been a difficult journey, but to be honest, it started with the decision to get a service dog. My husband had been kindly nudging me to get one for a long while, but I was always “looking into it.” I don’t know what clicked, but I finally acquiesced in 2011, around my birthday. Ironically, Jeevan and I were at the local shelter looking at some potential candidates, and I was walking a ginormous, yet gentle, St. Bernard (can you imagine that?) when my shoulder just gave out in pain. No reason. I had reached for my bag, and it just gave up on me. I had been struggling with “bursitis” (self-diagnosis) for years but had begun weight training in hopes of strengthening the muscles. In the end, those strong muscles did put off the inevitable for a while. The X-Rays showed the truth: my shoulder joints were gone. Who knows how long they had been like that? When you have arthritis everywhere, it just creeps from one place to the next without you knowing, taking secret root in your psyche. Just another thing that hurts. You don’t notice the toll it takes on your health. The fatigue, the slowing-down, the grumpiness, the depression. Again with the digression! But, I spend time on the background info because it’s essential to my service dog story. I had to come to terms with these things, to take stock of them, before I was ready for life with a service dog. To get a dog was to admit that I couldn’t do it all on my own, or that I could, but at a dear price.

After the “shoulder incident” at the shelter, I ramped up my search for a service dog candidate. I contacted a behaviorist to talk about what kinds of behavior a dog needed to show service potential. Any breed has potential, she said, but it’s true that Labradors and Goldens are very successful mobility dogs due to their retrieving instinct. Furthermore, with a breed rescue, you are much more likely to know the dog’s history than from a shelter. This is so important for a service dog because even thorough evaluation at the shelter doesn’t tell you everything that a life with a foster can. This is a dog who will go everywhere you go, who will encounter reactive dogs, people, and children. This dog will be an ambassador for other service dogs. Everything’s gotta click.

I found my match through Lucky Lab Rescue. This is truly an amazing rescue, entirely run by volunteers. Not only did I end up with the best service dog a girl could have, but we have now fostered three dogs with them, and I have seen the work that goes on behind the scenes, and these people are amazing. They are dedicated, and so organized. And compassionate. They led me to Max. I filled out an application and was forthright in my intention to train the dog for mobility work, and I hoped this would not go against me in the end. It did not! An adoption coordinator called me and said that there was a list of dogs who would probably work, but I had to meet Max. And, meet him I did. He had me at woof. He was 1 year young and a clown even then. But, he was also confident, self-assured, but kind. He was unflappable. Four men banging around in a large truck with a lift? Whatever. I got this, lady. You want me to meet your other dogs? Even the crazy cattle dog rescue who hates everyone? I’m a charmer, lady. A charmer, he was, and is. He’s the best.

The day I met Max. Look at that face!

Again, I’ll get into the actual training later, but I want to talk about what Max does for my disability. As the handler in the excerpt said, having a service dog puts you in the spotlight. I’m used to the spotlight, but I’m used to the kind of spotlight you can pretend to turn off. Someone staring? Oh, I’ll just pretend I don’t see it. Some kid just pointed me out to their mom (who pretends it didn’t happen)? I can pretend it didn’t happen, sometimes. (You’re lucky if I do). I can just go on with my day if I desire. With a service dog, it’s different. As I said before, he’s an ambassador for all service dogs. When someone makes what they think is a hilarious comment about how “hard” his job is when he is sleeping in a restaurant, I think it is my duty to say, “how many dogs do you know who could sleep while people step over him with steak?” It’s his job to be good while we aren’t working. Sometimes, it’s his job to sleep, to lie down, to let people step on his tail, to let a chip fall by his face, to ignore the world that is not me. This is tough, and many people seem to think it is their job to tempt him or to get him to break his service and then make a comment when he does. What would you do if someone kept calling your name and telling you how pretty you are? You’d wag your tail, if you had one.

I have to admit that I was too friendly about this behavior in the beginning, and so I let it slide, and now there are a lot of people around my small town who talk to Max. Mostly, it’s when we’re not actively working, but I’m sorry I let it happen anyway. It’s not fair to him to turn back now; he wouldn’t understand. I’m lucky that he resets very quickly. He’s got a greet command and a command to get back to work. I’m lucky he listens, really lucky. Believe me, with my next dog, I will not do this again. For the love of all that is right in the world, don’t pet the damned service dog. Don’t make kissy noises. Don’t talk to it. Don’t even ask. It’s hard to say no, especially if you’re a people pleaser. Make it easier for everyone: resist.

It’s also true that having a service dog slows you down. It is a huge responsibility. Just “running in” a store is darned near impossible. You have to gear up the dog, get the dog in the car, seatbelt the dog in, drive to wherever, get the dog out, stop and educate people, get your stuff, get the dog in the car, seatbelt the dog in, get in the car, driver home. It’s a bit easier when, say, I want to run in my favorite coffee shop (go Roscoe’s!); they know him there, and they know he’s a service dog. I can just put on his gentle leader and run in for coffee because I know I don’t need to use his bracing harness. Sometimes I brave places without his harness if I know I won’t need him to brace, but it makes me nervous. There is no requirement that a service dog wear a vest or harness, but it helps. Max does have a little badge that hangs off the leash, but I’m always risking some questioning when he’s not fully geared.

Max fully geared, under my feet on a plane.

The other thing I have to put up with is the famous question: What does your dog do for you? This is fine from a business owner or employee, but it is intrusive in any other context. It feels like I am constantly justifying my need for Max. I am sure that that is not the intent, but it gets old, fast. The ADA has this to say about service dogs:

When it is not obvious what service an animal provides, only limited inquiries are allowed. Staff may ask two questions: (1) is the dog a service animal required because of a disability, and (2) what work or task has the dog been trained to perform. Staff cannot ask about the person’s disability, require medical documentation, require a special identification card or training documentation for the dog, or ask that the dog demonstrate its ability to perform the work or task. http://www.ada.gov/service_animals_2010.htm

I usually respond to random people asking this question with, “he’s a mobility dog, and I use him to brace., but he knows well over 50 skills.” I don’t try to elaborate on what’s wrong with me. Sometimes people push, but mostly they respect that. I just wish they wouldn’t ask. It’s personal.

Traveling ain’t a picnic either. I have to pack for me, and for Max. He needs food, treats, a ball, some chews, extra poop bags. I have to remember peanut butter for the airplane to help pop his ears. Security is a nightmare. New cities mean new people, and new service dog cultures. Colorado is a dog place. It seems everyone has a dog, and in the mountains, people let their dogs hike off-leash. I hate this. I hated it before, but I really hate it now. Yes, your dog is friendly, but please, he cannot greet my dog. He’s working. See that slippery rock in my path? He’s going to help me over it, but if your dog distracts him, he’s not concentrating and not bracing. Put your dog on the leash! New Orleans is also a dog city, and there are a lot of homeless people with dogs off-leash. Makes me nervous. I hope your dog is friendly, but if not, does it have vaccinations? Also, one bad encounter with a dog could ruin Max for service. He cannot become afraid of dogs. Paris is also a dog city, and my Lord, there are a lot of yippy dogs out there. They tried to get Max every friggin’ day.

Max helping me snowshoe! This is one of the ways he helped return me to a fuller life, even if people don’t leash their dogs.

All this being said, I have to also say that having Max is worth every annoyance. He has made my life easier on so many levels. Traveling is a pain, but less of a pain than it was before. Paris used to be so tough on me with its uneven sidewalks and steep curbs. I prefer busses over the Metro because there are no stairs to navigate into subterranean stations, but there is that one big step, and the crowds. I always hated getting places. People never thought of me as disabled, so they wouldn’t offer seats or help. This last time in Paris, though, people offered to let me on first, and offered to help me up that step, even as Max was there to brace, and they offered me a seat. He braced all over the cobblestones and awkward curbs. He braced me all the way down the Pantheon steps, which don’t have railings. This was, in fact, the first time I have been to the Pantheon. I have always avoided it because of the steps. Thanks to Max, I got to see my beloved Hugo, Césaire, and Zola in their resting place.

Max enjoying the Eiffel Tower.

Max takes me out of that liminal space and puts me firmly in the disabled camp. He mediates my disability by making my world wider, safer, and more mobile. He also helps to mediate the fatigue, the slowing-down, the grumpiness, the depression. He mediates stares. People are usually way more excited to see a service dog than a dwarf, and that is fine with me, in the end. I’d much rather have to educate people about Max than be the object of curiosity. Children love to see Max (often mistaken for a horse, due to his saddle-like harness). I’ve always had to educate people about disability, it’s just shifted somewhere else. It is tough to always be in the spotlight, but I guess I prefer the gaze to be cast on my Max. He’s a ham and loves to wag his tail coyly as I explain why he can’t be petted to a little kid. It takes time, but it’s a worthy moment. I’d really like to live in a world where I didn’t have to explain any of these things, but that’s a bigger job. That’s why I write this blog.

One thing that has always confounded, and annoyed, me is the trope of “overcoming” disability in cinema. For me, it is akin to the Magical Negro character in Hollywood films, à la The Legend of Bagger Vance, Driving Miss Daisy, or The Green Mile. Basically, the Magical Negro is a term to describe a black character who helps some sad white person overcome whatever is ailing them. There has been a ton of academic work out there criticizing this trope, but I think this comic sums it up nicely.

Magical, no?

What does this have to do with disability? Well, see, tropes exist because we can recognize them, and they help us understand ideas as a society. While Americans use the Magical Negro trope to engage in (misguided) discourse about spiritual awakening, I argue that the equivalent trope for disability is the tale of “overcoming.” For me, this trope is one in which the bitter (bad) cripple learns to triumph over more often his, though also her, broken body with the help of friends, just like the Beatles song. It’s not always a bad cripple; sometimes, it’s someone who becomes crippled or who is diagnosed and must come to terms with the loss of a functioning body. Whatever the scenario, the character usually ends up the archetypal “good cripple,” spreading joy and inspiration to mankind. The tale is made for regular folk to feel better about their lives, and bodies. If so-and-so can overcome their pain and suffering, I can deal with my troubles. Yes, I can! Woohoo! Now, I can leave this movie and feel happy and not have to worry about what it’s like to be disabled, because they are all OK! Such a warm and fuzzy time.

The most recent example of this is the new film about Stephen Hawking: The Theory of Everything. Not only is he a brilliant mind, but he’s so inspirational. I mean, how can someone want to live like that? And be a genius? It’s too much for us to think about and not want to utter the words, “inspirational.” I mean, look at the trailer:

Oooh, ahhh. It could be a musical. It makes me want to throw ice water over myself.

But let’s talk about the real Stephen Hawking. He is brilliant, not in spite of his disability or because of it. He was always brilliant. (He did get some stuff wrong, but so did Einstein). In fact, he pursued his science at the detriment of personal relationships. This has everything to do with the pursuit of the gifted mind and not a broken body. He is an astrophysicist who is also disabled, not a disabled astrophysicist. Equally, I am not a dwarf French professor; I am a badass French professor who happens to have pseudoachondroplasia. Oh wait, here’s what the man Hawking himself says about his disability:

“If you are disabled, it is probably not your fault, but it is no good blaming the world or expecting it to take pity on you. One has to have a positive attitude and must make the best of the situation that one finds oneself in; if one is physically disabled, one cannot afford to be psychologically disabled as well. In my opinion, one should concentrate on activities in which one’s physical disability will not present a serious handicap. I am afraid that Olympic Games for the disabled do not appeal to me, but it is easy for me to say that because I never liked athletics anyway. On the other hand, science is a very good area for disabled people because it goes on mainly in the mind. Of course, most kinds of experimental work are probably ruled out for most such people, but theoretical work is almost ideal. My disabilities have not been a significant handicap in my field, which is theoretical physics. Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in. I have managed, however, only because of the large amount of help I have received from my wife, children, colleagues and students. I find that people in general are very ready to help, but you should encourage them to feel that their efforts to aid you are worthwhile by doing as well as you possibly can.” ― Stephen Hawking

There’s a lot to unpack here, but you probably get the gist. There’s a tad of the good cripple lurking in there, but generally, Hawking is a pragmatist. He did what he could do and that for which his mind was made. He also got out of a bunch of academic work that he didn’t want to do. Smart. I’m filing that away in my brain the next time I’m asked to chair a committee. Can you chair the ad-hoc committee on the use of the basement in the library? Nope. I’m busy because everything takes longer when you’re disabled. Sorry. But, if you get that elevator to work better and add some ramps and handicapped parking, I’ll think about it.

Sounds pretty “overcoming trope”-ish, if you ask me. I am going to coin a word for this: Cripptrumphant. If you use it, please, please give me credit. I want to be famous for making up a word. Add it to Urban Dictionary. Do it. And link back to the blog.

Though I’ve gone on and on about The Theory of Everything, you can see this trope in tons of films, such as: My Left Foot, The Diving Bell and the Butterfly, Passion Fish, Temple Grandin, and Intouchables. (There is also the trope of the happy mentally disabled, – I am Sam, Forrest Gump, The 8th Day – but we’re not talking about this here.) Don’t get me wrong, I enjoy the feel-good nature of these films, but at heart, it’s a difficult trope for those of us with disabilities. It makes it very difficult for us to live ordinary lives when everyone wants us to be extra-ordinary.

I’m actually working on a paper for the 20th/21st Century French and Francophone Studies International Colloquium about the international hit film Intouchables. This film has made a lot of Americans angry for its use of the Magical Negro trope, but not much has been said about the overcoming disability trope. I’m not going to tell you much about the paper now, but I’ll let you know when it’s finished!

One more thing before I go. Joseph Campbell argued that tropes and archetypes teach us about humanity. His famous work on the Hero’s Journey was famously used to explain the Star Wars saga. We use the familiar structure of the hero to give meaning to the human experience. If you’ve seen Interstellar, same thing. There’s a nice restructuring of Campbell’s work in Maureen Murdock’s The Heroine’s Journey; you can see a nice summary of both here: The Hero’s Journey. While I know that Jung is largely out of favor in terms of psychology, I do think that Campbell understands something about the metastructure of the human mythos. While his explanation is a bit male- and ablist-centric, he has a lot to offer in terms of how and why tropes/archetypes are important to build meaning. I think I just might come up with another iteration: The Cripple’s Journey. Again, don’t steal my idea!

So, Disability Studies is an emerging interdisciplinary field/theory that literature, sociology, history, cultural studies, and the like are beginning to use as another tool to talk about “otherness.” It happens to fit in nicely with other messy topics centering around the “other,” – the fancy word for otherness is “alterity” (my favorite philosopher on this topic is Levinas) – topics like race, sex, gender, and basically any minority.

Bear with me while I get a little theoretical for one moment; you can skip to the next 2 paragraphs if you want. No hard feelings. Anyway, the “other” is basically anyone who is not your “self,” but of course, there are myriad philosophies out there about how this leads to ethics and such, based on how one should treat the “other.” Think Sartre, Camus, Heidegger, Buber, Levinas, et al. I’m not going to get into that here, but I do want to get in to how this plays out in society. Basically, pick a topic. Let’s say race. As a white person, races different from mine are “other;” we do not have a shared experience in that regard. It also happens that I live in a society in which the majority race is white. Our government was designed by white men, for white men. Our institutions are white institutions. What we can chalk all of this up to is that our society is one in which the white experience is the norm; this is the normative experience.

You can extend the normative to any dominant experience. Being straight is normative. Being cisgender is normative. Being able-bodied is normative. Do you see where this is going? Some normative experiences are culturally/geographically dependent (i.e. being white isn’t the norm everywhere), while others are not (i.e. being disabled is pretty much never the norm). So, what does this have to do with Disability Studies? Well, by studying, and theorizing, about the way the disabled experience is different (i.e. “other”), we may be able to create a more inclusive society, one that includes experiences beyond those of the majority. Now you see why people who do Disability Studies also look to other theories and fields to talk about disability. Feminism, cultural studies, LGBTQ studies, postcolonial theory, among others, connect to each other in that they all address the relationships between the normative and the non-normative. This blog is about my experience with a non-normative body and how it shapes my world view.

Wake up! My academic mumbo jumbo is complete, so let’s move on to the good stuff: good cripple, bad cripple. This is a concept rolling around out there among those who do Disability Studies that normative society (able-bodied folk) have imposed two categories for us disabled folk to fit into. The good cripple is the one who doesn’t complain too much, the one who is upbeat and optimistic, the one who overlooks most of the ADA non-compliance issues, the one whose story inspires able-bodied folk because they have “overcome” their lot in life. They triumph! The bad cripple (there’s a blog about that) is the bitter one, the one who is depressed and mean, the one who is critical of every public space, the one who needs to “get over it.” BluntShovel does a nice job of talking about being a bad cripple, and the pressure one feels to be good when you want to be bad! I love, love, LOVE this post about why the “good cripple, bad cripple” binary opposition needs to change, and an interesting article, “Call Me a “Good Cripple” If You Must,” on the topic as well. Independencechick has got it right, if you ask me.

I have good cripple days and bad cripple days. I want friends, family, and colleagues who understand both. Of course I enjoy it when people tell me how well-adjusted I am, but it makes talking about the bad days tough. Sometimes my body hurts so bad that I just want to cry, but the “good cripple” in me only lets a select few see that side of me. But, I’m getting better at showing the other side of me. I think it’s important. How is society going to change if I’m the one who has to overcome society? I think most advocates have to be grumpy from time to time. As with most things, balance is essential. I’ve learned that being the good cripple too much has had the unwanted side-effect of people not really thinking I’m disabled or not understanding the extent of my underlying issues. My skeleton is a hot mess: that’s why pseudoachondroplasia is a skeletal dysplasia, see?

So, what part do you play in all of this?

Ask if I need help. Who doesn’t need help at certain moments. I think many people are afraid that disabled folks want to do everything on their own. To be sure, there are people like that out there, and they aren’t all disabled. But, if it looks like I might be struggling, I probably am. I love it when people hold doors or offer to reach high-up items at the grocery store. It makes people feel good to help, and I like not having to always ask.

Speak up. When you see someone illegally parked in a parking space, leave a note, – it doesn’t have to be nasty – or inform whoever might be in charge. Go out of your way when you have the time. Having a non-normative body means that we have to go out of our way to function in a world built for people with normative bodies. Advocate! I would love to see as many Facebook profile photos advocating accessibility as I do marriage equality, cancer awareness, or whatever.

Educative yourself; become thoughtful. If you have a friend, relative, or colleague with a specific disability (that they have disclosed, or is obvious), do your homework. I don’t expect for you to become an expert, but my mind would be blown if someone actually anticipated some of the problems I might have. My dissertation advisor read Ursula Hegi’s Stones from the River, and he told me that it had never occurred to him that it was painful for my legs to hang off a chair. I explained that, in high school, I had a stool in every classroom, but that I gave that up in college. The next day, there was a stool in the room where we had our graduate seminar. He told me I didn’t have to use it if I didn’t want to, but it was there. What a great feeling! I have never felt so welcomed as I have when friends and family have thoughtfully placed stools in strategic places before a visit. Recently, I was visiting a friend who had purchased a stool just for me. So wonderful. Or when I find a coffee cup and dishes waiting for me down low when I wake up in the morning. Such nice gestures.

Listen. I know it might be uncomfortable to hear about my pain or frustrations, but just listen. Don’t explain things away, or say things like “well, at least you can walk.” Don’t even get me started on that one. That time you broke your leg is not the thing to talk about when I’ve just found out my ankle is beyond help. Just listen. I’ll listen to your story another time. I promise. One more than one occasion, I have heard that people of color often encounter a similar situation when they bring up race or racism. People get nervous and can’t relate, so they might talk about the time someone told them they were a bad dancer, and they were sure it was because they were white. Reverse racism. Not the same.

There were the times the surgeons broke my leg.

Now is the time when I insert a nifty quote from a novel I finished last month, Americanah by Chimamanda Ngoziwhich Adichie. I think that race and disability are similar in many, though not all, ways because difference makes people uncomfortable, so talking about it is uncomfortable. The burden to have that tough conversation often shifts to the different person, so it’s nice to have someone to back you up.

Understanding America for the Non-American Black:

Thoughts on the Special White Friend One great gift for the Zipped-Up Negro is The White Friend Who Gets It. Sadly, this is not as common as one would wish, but some are lucky to have that white friend who you don’t need to explain shit to. By all means, put this friend to work. Such friends not only get it, but also have great bullshit-detectors and so they totally understand that they can say stuff that you can’t. So there is, in much of America, a stealthy little notion lying in the hearts of many: that white people earned their place at jobs and school while black people got in because they were black. But in fact, since the beginning of America, white people have been getting jobs because they are white. Many whites with the same qualifications but Negro skin would not have the jobs they have. But don’t ever say this publicly. Let your white friend say it. If you make the mistake of saying this, you will be accused of a curiosity called “playing the race card.” Nobody quite knows what this means.

When my father was in school in my NAB country, many American Blacks could not vote or go to good schools. The reason? Their skin color. Skin color alone was the problem. Today, many Americans say that skin color cannot be part of the solution. Otherwise it is referred to as a curiosity called “reverse racism.” Have your white friend point out how the American Black deal is kind of like you’ve been unjustly imprisoned for many years, then all of a sudden you’re set free, but you get no bus fare. And, by the way, you and the guy who imprisoned you are now automatically equal. If the “slavery was so long ago” thing comes up, have your white friend say that lots of white folks are still inheriting money that their families made a hundred years ago. So if that legacy lives, why not the legacy of slavery? And have your white friend say how funny it is, that American pollsters ask white and black people if racism is over. White people in general say it is over and black people in general say it is not . Funny indeed. More suggestions for what you should have your white friend say? Please post away. And here’s to all the white friends who get it. Adichie, Chimamanda Ngozi (2013-05-14). Americanah (pp. 361-362). Knopf Doubleday Publishing Group. Kindle Edition.

This brings me back to otherness and normative behavior. These things I have mentioned are all ways of recognizing, and legitimizing, my “other” experience. This is a step towards creating an inclusive society: to understand that we are all “other” in some way and to make steps to ensure that whenever we are not the norm, we can participate. Be the The White Able-Bodied Friend Who Gets It. I have a few of them. I hope they know who they are.

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